update: can job-hopping BE my career somehow?

Remember the letter-writer who was wondering if job-hopping could be their career somehow? Here’s the update.

So, at least one of the commenters correctly deduced that the name of my sleep disorder is Idiopathic Hypersomnia. Scientifically it is not well understood, but some people think it is related to narcolepsy, and it means that I feel like I just pulled an all-nighter basically 24/7. I’m still unmedicated for it. I really appreciated reading everyone’s advice and considering all of the options that were mentioned as far as temporary and seasonal work goes.

I ended up quitting the office job I mentioned in my first letter and moving to a different state. I thought that if I could live somewhere that was warmer, and therefore get more sunlight and exercise, it would help at least a little. My mom happened to live in a very warm state (no snow in the winter, lots of sun year-round), so I moved in with her. The original plan was for me to go back to school to get a nursing degree (2-year, community college route), then work as a nurse part-time. I still believe that a less sedentary part-time job with a high enough wage that I could actually support myself is my best bet. After researching all my options, I thought I could make a good nurse.

I got really homesick after moving, however, so I ended up taking a few temp office jobs in a row to give myself time to decide whether or not I was going to stay and actually go to school. (As a nice self-esteem boost, the job I left reached out to me and said if I moved back to my original state within a certain time frame, they’d take me back!) Then…. COVID hit. I was unemployed for several months, taking freelance things here or there and waiting for a broken unemployment system to come through for me. I told a few people in the comments that I cannot freelance because I don’t have the motivation to work from home, but… while I still struggle with motivation and scheduling at home, it turns out that that isn’t always true. I ended up moving in with my new boyfriend during COVID, and having him share the burden of things like meal prep and chores helps me a lot and seems to make freelancing possible for me. He’s incredibly supportive of me and my myriad medical conditions and I honestly don’t know where I’d be without him.

I finally found a job doing the exact same thing as the office job that I left in my old state, except for slightly less money, and I snapped it up because, hey, I have bills to pay. They hired me during the interview.

I don’t know why I didn’t mention this in my original letter, though, because it’s actually important: My commute to my fantastic office job in my old state was 2-4 hours per day. Which turned a 20-24 hour workweek (manageable, for me) into a 26-36 hour workweek (too much for me). The job I have now is a 30-min walk from where I live, and I work 20-22 hours per week.

So, yeah. The update is that I’m managing just fine with a very similar part-time office job, now that I have the support of a partner (and my mom, nearby), a much more manageable commute, and more sunlight and exercise than before. I’m even feeling well enough that I still freelance on the side. And my new job is incredibly flexible with hours and time off, so I’m still in a good position, and the pay cut is honestly worth it for the shorter commute (and I’ve exchanged PTO accrual for employer-paid healthcare, which is arguably more useful to me as far as benefits go). I eventually hope to go to school for nursing, but for now I’m waiting to ride COVID out first.

So yeah, that’s the short version of my story. I still haven’t found a career I want to settle into, and I still struggle with my health. But I’m not suffering nearly as much as I was when I wrote to you, and I have a lot less anxiety about the future now.

I hope that’s a good update! Thanks again for taking my question, and thanks to all the commenters who tried to help me with my problem. I really appreciate it.

{ 85 comments… read them below }

    1. Joan Rivers*

      But forgetting you had such a long commute is an amazing omission because the amount of strain that puts on you is extreme.
      If you have health issues you have to accommodate them; good job doing that.

      I’d add that the relation between physical and emotional health is huge.
      You feel to me like you’re at war w/yourself sometimes. Maybe finding therapy, even finding a group, might help. Groups share tips and support.

      1. GreyjoyGardens*

        Oh god yes! Even when I was a dewy young thing in the very pink of health who could work all day and then go out and party…a multi-hour commute would wear me right down! That long in car or on train would mean a lot of my social life or housekeeping or hobbies or any combo would have to go. Now throw in health issues on top of that, and no wonder LW was feeling awful.

        Long commutes are SUCH a problem. LW, I’m glad you solved that, and are doing so much better, and I hope you can get some help for your medical issues as well now that you have insurance. Hooray for good news!

        1. Elenna*

          Oh, yeah, I had a 2-4 hour commute back before covid pushed us all to WFH, and it was exhausting even with being healthy and being able to nap on the bus. (I’m planning to find a place to live closer to work this year).

  1. Chilipepper*

    That is such a great update! I loved reading about the ways you managed all of it, the move, the trial jobs, the long term plan! Congrats and I hope you get to go to nursing school.

  2. Scout Finch*

    Perfect timing! I was jonesing for an update.

    WTG OP! That previous commute would make anyone exhausted.

    So glad you are on a good track. Thank you for sharing your update with us.

  3. mcfizzle*

    I might get blasted for this, but nursing is life or death. If you feel like you can’t concentrate or remember, I would be very, very leery of nursing being a good career, even part time. The stakes are so high. That being said, I truly wish you the best both for health and work!

    1. Quickbeam*

      I’ve been an RN for 35 years and I strongly agree. Nursing is, for at least the first few years, filled with shift work and mandatory overtime. Hey you thought it was an 8 hour shift? Sorry, it’s now 16. The sweet part time jobs? Now filled by med techs and medical assistants.

      I’d recommend a sleep study and a full work up to unpack the issue before ever thinking about nursing eduication.

      1. ThatGirl*

        The OP said in her original letter that she’d tried medications and so forth, I think it’s safe to say she’s seen a lot of doctors and knows by now what she can or can’t handle.

      2. gsa*

        As someone that was diagnosed with a sleep disorder, and ultimately prescribed effective therapy, I definitely agree on a sleep study and full work up. And I recommend it regardless of considering becoming an RN.

      3. Red 5*

        If she has a diagnosis of IH she’s had probably multiple sleep studies and specialists. Average time from onset of symptoms to diagnosis is measured in decades. It took over 20 years, three overnights, an MSLT, three sleep specialists and countless primary care docs for me.

        By the time you get diagnosed with IH you’ve unpacked almost too much and realized you’ve still got nothing in the way of help or support from most of the medical community.

      4. Letter-Writer*

        I’ve had multiple sleep studies. My diagnosis is as firm as it’s ever going to be.

        I would only work part-time. I wouldn’t dream of trying to take a full-time position. If I work 20 hours a week as a nurse I won’t be any sleepier or liable to make a mistake than a healthy nurse working 40-60 hours a week.

    2. I'm just here for the cats*

      I agree, there is so much information that nurses have to learn and remember. It’s not as easy as they make it look on tv. Maybe something like a CNA or something would be more useful? I’m not in the medical field so I don’t know what a good job would be if LW wants to be in medical field.

      1. Reba*

        Occupational therapy and physical therapy assistant came to mind. Active, with regular hours (not hospital shifts).

            1. earlgraytay*

              Unfortunately, disabilities don’t care how old you are.
              If your body goes screwy, it goes screwy. There’s no age below which you are Guaranteed to be Healthy.

            2. Kal*

              The original letter said she was in her early 30s. I don’t know why you put the word issues in quotation marks, but it comes across as though you are questioning whether her disability is real, which is a pretty shitty thing to do, for the record.

              But if you’re just curious what its like to be young and have disabilities that make it hard to maintain employment, I’d be happy to talk (somewhere else, so as not to derail this thread). I am 30 and have 10 different diagnosed conditions that make it quite hard to have a job, and these conditions began to seriously affect my life back when I was 12.

              And to the LW: I’m glad you have a support network now so you can have a better quality of life overall. I hope you’ve been able to continue your therapy after the move, since its so important for all of us when we are dealing with such large struggles. They may even be able to help you talk through what you actually want and what you can physically manage in a career, and whether nursing or any other potential ideas fit with that. Occupational therapy like the other commenter suggested might be a good idea to look into – you do at least already have the benefit of firsthand knowledge of the struggle to learn how to do things differently to accommodate your abilities to get to where you want to be.

              1. 'Tis Me*

                If she weren’t only 28 I’d be checking if you were my sister… I hope things improve with time (while being aware that may not be likely) xx

    3. Me*

      I think that if OP is impaired to that degree then the OP will find it difficult to even get through to her degree. If they can manage to make it through school I think they’ll be fine. There are also many many different places to work as a nurse with varying levels of responsibility including not being life/death type care.

      1. Red 5*

        Agreed that if she makes it through school she should be able to figure out how to make the job work.

        There’s coping strategies like there are with any illness, we figure it out. And we figure out our limits too. There’s not just one path to nursing and only one specific type of nurse, she’s got options and she sounds adult enough to evaluate them.

      2. married to an RN*

        Came here to say this. Nursing is an extremely inflexible job – if you’ve got a shift scheduled, you show up, on time, and stay until your replacement shows up, unless you’re actively bleeding out. And part-time, daytime shifts are very difficult to get as a new grad, although if you can do a year of full time and/or overnight shifts then you can have your pick. (Or if you can work in an area with an extreme shortage of nurses – but nowhere that has a nursing school has a shortage of new grad nurses.) But I agree, if someone can make it through nursing school, they can probably make it through nursing shifts.

          1. I'm just here for the comments*

            You don’t get those jobs until you been a nurse for at least a few years. Doctor’s offices don’t want new grads, and many outpatient places want you to have previous ER/OR/ICU experience. A better place to start would be sub-acute rehab or nursing homes, although those come with their own set of issues. Someone had mentioned being a CNA (certified nurse’s assistant) and I agree it’s a great starting point to see if you even like being in the field of patient care.

      3. Letter-Writer*

        Yeah, if I can’t make it through nursing school then I’m worse off than I thought and I’ll do something else, haha. If I can make it through school and I only work part-time, I don’t think I’ll be any more dangerous of a nurse than someone working 60 hour weeks.

    4. WellRed*

      My roommate is currently a nursing student and I’m frankly…concerned, including for her penchant for getting up and then randomly falling asleep and being surprised that it’s noon. Among other things.

    5. AnonyNurse*

      I’m a highly competent, well respected, nationally recognized in my field, RN-MSN. I have idiopathic hypersomnia.

      Thank you for contributing to the “nurses eat their young” culture before OP even applies! Nurses like you are why 30% of new grads leave their first job in less than a year. Why so few people with disabilities purse nursing despite having experienced that can benefit patients.

      There isn’t one way to be a nurse. Hospitals aren’t the end all be all. It isn’t a competition. Stop contributing to the lateral violence between nurses and towards CNAs and MAs.

      A nurse who is damn good at my job despite my disability

      1. mcfizzle*

        Wow I’m contributing to violence now??

        Honestly, if someone constantly feels like she’s pulled an all-nighter (which is what she said above), I wouldn’t want that person to be trusted with my healthcare.

        Glad you have something that works for you, but that doesn’t mean it’s the same for the letter-writer, at least at this point.

        1. Kal*

          Given what I know about many nursing jobs, the LW already being used to coping like feeling like they pulled an all-nighter might well make them a more competent nurse compared to people who are used to being able to be well rested but are prevented from ever being able to do the shifts. I wouldn’t exactly pick someone who’s normal cycle is to sleep from midnight to 8am who is now working a night shift causing Shift Work Sleep Disorder to be trusted with my healthcare (and I have had to trust my life and care to healthcare workers in that situation before), but that is the system we have.

        2. Letter-Writer*

          Ironically enough, even after pulling an actual all-nighter I’m more functional than healthy people who pulled one. I guess I’m just… used to being exhausted.

          If you’d trust a nurse working 60 hour weeks to care for you, you could trust me working 20 hour weeks to care for you. It would be fairly equivalent imo.

    6. Sloan Kittering*

      I wondered if anyone with direct experience in nursing could comment on this plan; it didn’t necessarily fit with my expectation of nurses, but I’m not speaking from experience. It seems to me that anything with really long shifts would be a struggle, and I hate for OP to pay a lot up-front for any kind of degree/certification without being sure.

      1. I'm just here for the comments*

        Speaking as a nurse I agree that hospital life can be brutal, and a lot of jobs that will be available to a new-grad nurse are not going to be flexible or easy, although many jobs will give great experience that OP can then use to find better work, but it’s a process. I’ll repeat my earlier response and agree with the commentator who suggested CNA first – it’s a certification, it gives experience of patient-care and allows you to see if you want to continue in the field. The nursing field is huge and there’s a lot there that isn’t direct bedside-care, although getting to those jobs can require further schooling and work experience so it’s going to depend upon how much much OP can- and wants to- put into building a nursing career. But I would not recommend Nursing as a back-up career plan because you think it will be easy. Rewarding: Yes. Easy: No.

    7. Letter-Writer*

      Hey, so, I understand where you’re coming from with this. But if I work as a nurse 20 hours a week, I’m not going to be any more exhausted or liable to make a mistake than any regular nurse working 40-60 hour weeks. So I hope that the job is designed to accommodate sleepy people, otherwise they have no business letting healthy nurses work overtime.

      for the record, while I still have some working memory issues, my concentration and memory is loads better than it was before. As long as I use checklists and other memory aids I do fine.

  4. RealPerson01*

    Glad to hear things are working out for you! As someone who suffers from Sleep Apnea and is always exhausted I have somewhat of an idea of what you are going through and just how tough it can be to continue to do good work through the Fog.

    a 2-4 hour commute is brutal, for almost anyone. And is a huge driver of quality of life. I’m glad you were able to find something with a much more manageable commute.

    1. GreyjoyGardens*

      When I got treated for my sleep apnea, I became a whole new person. I love my CPAP and will not spend a night without it, because I can feel the difference. OMG getting adequate sleep was a life-changer.

      I had to kick and scream for a sleep test because I was not the “typical” apneic (I was younger, a woman, not overweight) and didn’t have a bed partner to tell me if I snored or not. But kick and scream I did, and lo and behold – not just sleep apnea, but, to quote my pulmonologist, “wow, you have SEVERE sleep apnea!” My facial structure means I have a narrow airway.

      Anyhow, I’m glad I got tested and a CPAP. It can take some experimenting to find the right mask (I can’t use nasal pillows so I just use an over-the-nose mask WITH A LINER, which makes all the difference in comfort) and a heated humidifier.

      I’m an absolute evangelist for sleep tests, and I mean the in-lab kind, not the chintzy “clip an oximeter on your finger at home” kind.

      1. Blaise*

        I’m a teacher and I’ve had multiple students who were more or less terrors at school, but they eventually found out they had some sort of sleep disorder (I know for sure one ended up having apnea, but not positive on the others). In every single case, it was NIGHT AND DAY with these kids. It made me wonder how many other kids who act out at school are just not getting healthy sleep. Totally mind-blowing to witness.

        1. 'Tis Me*

          My newly minted 3 year old, well-rested, is a sweet, helpful, affectionate, obliging, funny child. She is very independent and stubborn, but can usually be distracted and redirected when her impulse is to do things we would rather she didn’t.

          When she is over-tired, she is grumpy, obstinate, reckless, stroppy, has zero impulse control, and is prone to tantrums, throwing things violently on the floor (then getting upset because she wanted them)… Thankfully, the child recognises she needs sleep and will take herself to bed at a certain point!!

          Our 6 year old has always been very good at coping with less sleep than ideal (and was a FOMO baby who didn’t like sleeping, so the fact that she was at least in a delightful mood even though she’d barely slept 3 hours in 24, say, was a bit of a saving grace really). If she’s really tired she may be a bit prone to weepiness, but when she was a toddler, you wouldn’t know she was, say, up 3 or 4 hours past her usual bedtime for a family meal out because she would be her normal sweet, happy self. (Wait staff would comment that she was welcome back any time, at largely-aimed-at-adult restaurants.)

          Some kids REALLY don’t cope well with being overtired, and I find it very easy to believe that sleep disturbances and poor sleep quality can cause all sorts of issues. Also hunger. There are times when a small snack can completely transform a child!

  5. Geologyst*

    This was a wonderful update. As someone who deals with chronic illness/disability, I know all too well the struggle to balance it all and it always does me good to hear about someone finding something that works for them.

  6. Euphony*

    I’m sure you’ve probably already looked into vitamin B12 deficiency/functional B12 deficiency as a possibility (as its notoriously difficult to diagnose), but I wanted to mention it as I was also diagnosed with Idiopathic hypersomnia and medicated for 10 years before finally being diagnosed with B12 deficiency. I was very surprised to discover that nearly all my hypersomnia symptoms vanished with effective B12 treatment.

    1. Letter-Writer*

      I take a vitamin B-complex every day, including a form of folate easier for my body to absorb and B-12 as well. I’ve had my B-12 levels test low before, but most of the time they test pretty normal. Thanks for the suggestion though!

  7. H. Regalis*

    I have idiopathic hypersomnia too. Hats off to you for being able to function without meds. If I weren’t on Ritalin+enough caffeine to give a normal person a panic attack, I would have no quality of life whatsoever. I’m glad you found something that works for you.

    1. kitryan*

      I also have idiopathic hypersomnia! I was reading the OP’s update thinking that they had things a bit worse than me based on the description, but then they mentioned the commute! If I had that commute, I’d feel terrible all the time (instead of just some of the time) too! Like OP thought, I also find things easier to manage if I’m moving around at least on and off throughout the day, as the sleepiness tends to come on most strongly when I’m physically relaxed in some way- like sitting and staring at a computer screen or watching tv. When I had a job where I was doing 1/2 desk work and 1/2 running around the building and town on various errands, my symptoms were less severe.
      I’m glad to hear that the reduction in hours and commute along with more sun, exercise and having someone to share household tasks with has helped the OP! That’s great!
      I mostly cope myself by being careful of my energy output so as to minimize ‘crashing’ after busy days and by judicious application of afternoon coffees (which I didn’t need until I started my current job where I’m at the computer 100% of the time).

      1. GreyjoyGardens*

        I think a 2 to 4 hour commute could leave the Energizer Bunny drained. It’s no wonder that someone who already had a “spoon sapping” chronic illness would find it hard to cope.

        I believe there is actual science out there saying how unhealthy and demoralizing long commutes can be.

        1. Letter-Writer*

          I honestly had no idea…. it was a major oversight for me not to include the commute in the original letter! But I really didn’t realize how bad it was until I stopped having to do it.

  8. Bob*

    Are you sure its Idiopathic Hypersomnia?
    I’m guessing Alison would delete my post if i posted a long novel about sleep disorders and diagnostics and treatments but i hope you did hunt down some of the best people in the field to be sure.
    That said i’m glad things are working out for you, and do stay on top of current sleep research (as long as it doesn’t affect your mental health).

    1. Liza*

      The hypersomnia part is pretty obvious from the letter, and “idiopathic” means “of unknown cause” so yes, the letter writer can be sure it is idiopathic hypersomnia. Maybe someday another sleep doctor will figure out the cause of the letter writer’s hypersomnia and then it won’t be idiopathic anymore, but until then that’s the right diagnosis.

      1. Red 5*

        Thank you for that.

        I also have IH and I tend to say that “my current diagnosis is IH” but that doesn’t mean that’s not what it is, just that we might get better diagnostic information in the future.

        And also the treatments for IH track with other hypersomnias pretty closely so there’s only so many other places to go.

      2. Bob*

        My point is that its often easier to throw a label on something and tell the patient to live with it than to diagnose non common conditions.
        I could write an encyclopedia on that, and a novel just on the sleep part.

        1. Red 5*

          I mean, I could write that encyclopedia too, and my current diagnosis still is idiopathic hypersomnia (just had an appointment with my sleep specialist yesterday).

          It is important to stay up on the latest research if you can, and to make sure that you’re continually revisiting the question with your doctors not just about the diagnosis but also if the treatments you’re using are still working (which is what my appointment was yesterday, and my doc wants to do a new overnight and MSLT when the pandemic is over just to have newer data to work with). But in my experience, idiopathic hypersomnia is not a catch all label that gets thrown onto people very lightly or quickly, and by the time that’s on your chart, you already know most of the song and dance.

          I was misdiagnosed multiple times, including being put on antidepressants for years. I had multiple primary care docs implying or stating that I’m just lazy. I was tested for apnea three times, and then one of those primary care docs tried to insist that I had to get tested again because even with three negative results he just couldn’t believe that somebody who was overweight and tired could have anything else. I also had a sleep specialist who saw my negative results on the apnea test tell me I just need to drink more coffee. Literally, that if I was tired I just needed to drink a cup of coffee.

          Idiopathic hypersomnia IS a non-common condition. It’s considered a rare disease, and it’s so little known that I’ve had to explain it to multiple doctors because they’d never even heard of it. It’s also something that takes, on average, decades to go from onset of symptoms to diagnosis. It’s not a label that’s applied lightly to most people, especially women who struggle to be heard in the first place due to medical bias.

          People absolutely need to know more about sleep health and need to stay on top of their own health and be their own advocates because at least in America primary care doctors are woefully unprepared and uneducated when it comes to sleep disorders, that is incredibly true. And Americans are also very uneducated about what normal and abnormal sleep actually is like. Everybody should know more about it. But as somebody who struggled from the time I was a teenager until I was in my 30’s with a disorder that wasn’t diagnosed or recognized or taken seriously, I think it’s wise to be careful about telling someone that their diagnosis is probably wrong if you don’t know their journey or their medical history.

          1. Bob*

            “idiopathic hypersomnia is not a catch all label that gets thrown onto people very lightly or quickly”
            I cannot agree. I spent several decades and dozens of doctors and having to hunt down one of the top sleep researchers in Canada in order to get diagnosed with Non 24 hour circadian rhythm disorder.
            I’ve also had many sleep studies, many misdiagnoses and repeated tests. But sleep disorders can be caused by vitamin deficiencies (B12, vitamin D, and several others), hormone deficiencies (testosterone, estrogen and many, many, many more), thyroid issues, tumours, neurochemical imbalances, brain damage, restless legs, sleep apnea, concussions, delayed sleep phase syndrome, antibiotics, medications that should not cause sleep issues but do in a small percentage, medication interactions, antidepressants, overuse of sleep medications, allergy medications, Parkinsons, allergies, heck i even read an article that suggests sleep issues may even be indirectly caused by osteoporosis.
            No one doctor can rule all these (and more) out.
            All this is only the tip of the iceberg.

            As for your multiple apnea tests, thats known as anchoring bias, Figure 1 has an interesting podcast about that.

            1. Red 5*

              Perhaps this is a difference in the Canadian and U.S. healthcare system then.

              Nothing you say is untrue, but it’s still not addressing the root of the problem which is that if you don’t know the person’s journey and what they’ve been through to get to their diagnosis, calling their doctor and their life into question without information is not a kind thing to do.

              I was tested multiple times for everything you’ve listed, most of them multiple times. I don’t have those things. I have IH.

              I am not the OP, but if I talked about my diagnosis and my difficulties living with a chronic illness and somebody came back with “are you SURE that’s what’s wrong with you?” I would be insulted and upset, and it would just be yet another reminder of how so many people think I’m not able to know what’s happening with my own body, from doctors to random coworkers, everybody seems to have an opinion that is supposed to be more valid than my own.

              I understand that you’re coming from a good place in your heart and that this isn’t what you’re trying to do. I’m trying to point out that other people will not receive it that way and that you are not coming across that way, no matter your intent. You should rethink the way that you impart this kind of information if your goal is to help people learn about the vast and mostly unknown world of sleep disorders.

            2. Kal*

              You can say all that, but I’m Canadian and I diagnosed my own Non24 (after it progressed from Delayed Sleep Wake Phase Disorder), and my doctor was just like “k, sounds right”. Having to track down a top sleep researcher to get diagnosed with what seems to me to be one of the more common sleep disorders sounds weird to me, and meanwhile idiopathic hypersomnia wasn’t even ever once mentioned in my 20 year path of getting diagnosed – they just tested me for mono 14 times, for sleep apnea 6 times and gave me a whole range of antidepressants and a couple anti-psychotics and some not at all fun stimulants.

              So I cannot agree with your lack of agreement with the previous commenter. Of course, I accept that different people are different and have vastly different experiences with doctors, so I’m not going to pretend that my experience is universal. You had the diagnosis applied to you quickly, but that doesn’t mean it is typically applied quickly and lightly to people, just like how my personal experience doesn’t mean that non24 is a diagnosis that is applied quickly or lightly.

        2. AnonyNurse*

          Or it’s the opposite. I was told from
          high school that I slept for 12-14 hours a day because I was depressed. Was on so many meds that it triggered some mild manic symptoms so then I got a bipolar II diagnosis and was on a mood stabilizer.

          Until I relocated and had my first visit with a new psychiatrist, did the usual rundown of symptoms of my depression and he looked at me and said, “what if you aren’t sleepy because you are depressed, but depressed because you are sleepy?”

          I am a medical professional. This had never occurred to me. Had never been suggested. I was 37. I’d been suffering for nearly three decades, believing that I was not as competent or committed as anyone else, cause they could have jobs AND social lives, or they could pick up lots of overtime.

          Now I am on meds for IH (wakefulness promoter and small dose of stimulant as an ‘as needed’) and nothing else. No mood stabilizer. No SSRI. Even my “anxiety” resolved when I could address the sleepiness, so no more klonopin.

          I don’t know where hypersomnia disorders are being overdiagnosed. My experience, and that of others I’ve met online, have been just the opposite. Years of chalking it up to psychiatric issues or character flaws.

          I’ve never felt well rested in my entire life. And my diagnosis was hard fought for.

          1. char*

            This is really similar to my experience. Most medical professionals have suggested either that I’m tired because I’m depressed (no, I’m depressed because I’m too tired to do the things I want and need to do!) or else imply that I’m lying when I say my anxiety is well-managed and assume that I must be laying awake all night worrying about things (even though I sleep 10 hours a night). Very frustrating.

          2. Red 5*

            Exactly, that’s the same story I’ve heard many, many times and it tracks very closely to my own.

            It took me literally decades to get doctors to understand that at the bottom of everything I was just TIRED and maybe we could look at that instead of trying to make it my fault in some other way. Even after my diagnosis primary care doctors will question the sleep specialists and try to insist that it’s actually a psychology issue or that I’m just not active enough and it’s all in my head.

            One PCP actually tried twice to get me to stop taking the medication I take for IH by insisting it was causing side effects that it was impossible for it to be causing. The first time I was only taking it as a trial and he convinced me to stop, even though I was in his office with severe abdominal pain. The second time I was having trouble breathing while _sitting in his office_ and he threw out the results of the spirometry saying that they couldn’t be right because the only problem was I was dependent on a medication that I shouldn’t be taking because I didn’t have IH and I should discontinue the only medication that had ever come close to helping me get back to feeling more like a normal person.

            The only thing that leaves me more exhausted than my sleep disorder is the fight to have it accepted and understood. I threw out the doctor instead of the meds and I’m feeling much better.

    2. Letter-Writer*

      I’ve been to dozens of doctors in different cities, states, and countries for sleepiness and fatigue ever since I was 16… so if this isn’t the right diagnosis I have been utterly failed by the medical system and there’s nothing I can do about it. *shrug emoji*

      1. allathian*

        Oh, I don’t know. Idiopathic simply means that the cause of the disorder is unknown. This may not be true forever. I’m glad you’re feeling so much better now.

  9. Littorally*

    Oh wow, that commute makes a huge difference! Especially if it’s a driving commute, where you are actively involved in an activity that requires a lot of focus and brainpower.

    It sounds like you’re in a much better place now, and I’m really glad for you.

  10. Lizy*

    Wow – that sounds like it crazy sucks (the sleep disorder part, not the other stuff lol). I’m sorry!

    But – I’m glad you’re in a better spot! Even the tone of your update sounds like you’re doing better. I can only imagine how the crappy sleep can affect your mental health… heck, I get cranky and depressed if I don’t get a good night’s sleep for 3-4 days! It’s so refreshing to hear positive stories like this. :)

  11. Liza*

    Idiopathic hypersomnia fistbump! Mine was scary for a while (I was sleeping 16 hours some days and missing a lot of work) but we found a combination of things that got it under control for me. I’m so glad you’re in a better situation than you were before, and I wish you the best for the future!

    1. kitryan*

      Hey there- fancy running into you here – we met at 4th street back in 08 and 09 (i recognize your icon). I didn’t know you were also a sleep disorder person!

      1. Liza*

        I didn’t know it yet myself when I last saw you–it didn’t get bad enough to seek a diagnosis until a few years later. It’s fun to have run into you here, I’m glad you said hi! (I recognized your name immediately, but I would probably have assumed it was someone else with the same name.)

        1. kitryan*

          Yeah, I got diagnosed way later too – around 2014. Moving to a 100% desk job in 2013 made it more obvious something was going on.
          Nice to ‘see’ you again!

  12. RJ*

    This is a really good update, OP, and I feel your pain on the commute to your old job as mine was very similar. It takes so much energy out of your workweek and workday to be on the road for 20 hours a week. Glad you’ve found a better position, nearby support and a walk to work commute.

  13. EPLawyer*

    Awesome update.
    And if you figure in the health insurance + the reduced cost of your commute (less gas, tolls, bus fees whatever) your pay cut isn’t probably as much as it appears on paper.

    Plus getting back all those hours a week from your commute appears to be LITERALLY life changing for you. Can’t put a price on that.

  14. char*

    Oh wow, I’ve also been diagnosed with idiopathic hypersomnia, and I can relate a lot. The 2-4 hour commute sounds like a nightmare! Personally, I’m too exhausted to feel safe driving more than like 15 minutes at a time. Similar to you, I ended up moving within walking distance of work, which has helped a lot. And I also have found that working about 20 hours per week is what’s workable for me. I feel weirdly guilty about my shortened schedule sometimes, so it’s pretty validating to hear about someone else with the same issue who’s settled on the same sort of hours!

    1. Letter-Writer*

      Oh, the commute was not via car! I guess I didn’t specify. I was taking the bus, which I… frequently fell asleep on. But fortunately my stop was the last stop of the line so the bus driver would wake me up if I didn’t wake up on my own when we stopped.

  15. Anon for medical things*

    Oh wow, I was diagnosed with idiopathic hypersomnia about 15 years ago when I was in college, and completely forgot about that until I heard the name of it. It turns out I had three different subclinical issues (hypothyroidism, iron deficiency anemia, and depression) but each one individually wasn’t severe enough to “pop” on any diagnostics. In a way I was lucky that each thing continued to progress so they could all eventually be diagnosed AND treated. I’m still not high energy in general and definitely not a “morning person”, but close enough to functional and independent. I suspect I have some other issues too but I’m 85% of the way there so is not a priority to keep digging.

    I’m not saying this to diagnose, just to sympathize with OP. It sucks when doctors can’t find (and therefore treat) anything, all while still trying to live your life. And it’s especially bad when you’re young and everyone expects you to have more energy, or just blames you by assuming you stayed out too late partying. I’m really glad you found something that works for you.

  16. Retail Not Retail*

    It’s interesting to see that a sedentary job is working right now – I bet getting to walk to work instead of having to drive makes a huge difference there!

    I’ve never had a true sedentary job and I know I need one and the longer I go without, the more comfortable I am with being active, the harder it seems to break into “sitting all work day” jobs (even being inside all day makes me itchy these days).

  17. AnonyNurse*

    RN with IH here. I got diagnosed several years into my nursing career. I gravitated to night shift even before I was a nurse, because everyone is tired on night shift. Made me feel normal.

    I worked direct hospital care for a couple years undiagnosed/unmedicated but caffeine, always on nights.

    Now I’m well managed with treatment, and I work in public health which was always what I planned.

    There are so many ways to be a nurse. It isn’t all 12 hour hospital shifts. And nurses with disabilities and challenges add to the field.

    My one word of caution, OP: nursing school can be ROUGH. Much of nursing school culture in many places, both class and clinical, continues to be bullying, hazing, “nurses eat their young.” There’s a notion that not being like everyone else is bad, and accommodations can be sneered at and you’ll get pushback and/or backlash from faculty, clinical instructors, or peers. (See: nurses replying here that there’s no way you can be a nurse based on a single letter).

    Now I’m nationally known in my field. I got my MSN. And I’m proud to be a nurse who does it differently. There’s a path for you if you want. Good luck!

    1. I'm just here for the comments*

      Unless there’s more comments below that I haven’t gotten to, I’ve reread the OP’s letter and other comments. I’m not getting the sense that there’s a concerted effort to discourage the OP from a nursing career. Acknowledging, as you do, that the nursing environment (both school and work) is ROUGH is simply reality (even without any bullying from other nurses), and the OP won’t have the low-stress, part-time jobs as available options for the first few years is also reality. I have both a B.A. in Biology (and completed the pre-med track at the time) and my BSN, and if I had to repeat either degree I would choose my Biology. I’m glad you have been successful in the field, but I think OP needs to take a few more steps before simply jumping into nursing school.

  18. Sparkly Fishies*

    Wow I can’t believe someone else has the same thing I do! Idiopathic Hypersomnia here too and damn is it not only just poo being tired all the time, but I feel like I’m just being dramatic or overexaggerating half the time. I have found a medication that works well enough that I can mostly function, but it’s a battle the whole time. What has helped is finding work that interests me and plays to my strengths and working remotely. The former lets me contribute enough to feel validated, and the latter leaves more time in the day that allows more sleep if I need it.

    Anyway, you aren’t alone, good luck out there

    1. Red 5*

      I’m starting to think we need to form a club or support group. It’s making me feel so much less alone seeing so many comments from other people dealing with IH, it can be such an isolating diagnosis. <3 to all of you guys :)

  19. Working Hypothesis*

    Congratulations, LW! It’s great to hear that you’re in a place that’s so much better for you (reading ‘place’ both figuratively and literally).

  20. Moi*

    Congrats on your diagnoses! My husband has it as well. He’s found the Hypersomnia Foundation to be incredibly helpful as far as resources, research and information goes.

  21. PookieLou*

    This made me (diagnosed narcoleptic) so happy! I’m glad your boyfriend is supportive and helpful (so many people in my narcolepsy support groups have partners who think they’re faking it or just being lazy- it blows my mind!) And hooray for a shorter commute! Best of luck with nursing school! It’s definitely possible to work as a nurse with a sleep disorder. Plus, your struggles with IH will give you a strong sense of compassion for patients who suffer from chronic/invisible illnesses, which will mean the world to them.

  22. Wren*

    a wonderful update! I’m so happy for you. I hope we’ll hear for from you in future years; best wishes.

  23. Fish Girl*

    I’m another reader here with IH too! There are tens of us! I’m glad that you’ve found something to work for you. I work in the sciences, so although I’m sitting a lot, I’m doing a bunch of benchwork too. It’s a little easier to stay alert when pipetting or using surgical tools, than when I’m staring at my computer. Maybe a job in a lab could work for you too? For the longest time, I was in the animal care side of science (changing cages, health checks, cleaning everything), which kept me on my feet and awake. Most animal care jobs ask for a HS or BA degree, but doesn’t need a specific degree and often need part time workers too, so that could also be an option for you in the future. It also doesn’t pay great, sorry.

    Finally, I hate to be that person that says “But have you tried this?!”…but have you tried Sunosi? It’s a newer drug (like only 2 years old), so it’s possible your doctors haven’t recommended it to you yet, but it literally been a miracle drug for me. I finally feel like a normal person. I’m still sleepy and I can choose to nap at will, but that’s it exactly: it’s a choice now. Like if I lie down on the couch, I’ll be a sleep in under a minute, even on this drug. But I don’t fall asleep while driving, or reading, or working. I can finally watch an entire movie in one sitting. I’m not sobbing with how exhausted I am. I’m still sleepy, but it feels like how normal people complain about being sleepy. I will still sleep for 12 hours if given the choice. I don’t think I’ll ever wake up naturally and feel refreshed. But when my alarm goes off after 8 hrs, I can get up and take my meds without falling asleep on the floor next to my bed. I have only minimal side effects from it. It’s a beetch to get covered by insurance, but there’s some work arounds. I’m more than happy to talk to you more about it, if you are interested. (I swear I’m not a pharm rep! It’s just been such a life-changing drug for me, I want everyone with IH to at least know about it.)

    1. Letter-Writer*

      So! I actually was prescribed this, but insurance wouldn’t cover it. Since I’m coping pretty well without medication these days, I decided to keep going unmedicated for now. I’ll consider trying it in the future if I feel like I really need it, but my preference is to not be reliant on the medical-industrial complex if I can help it (and I’ve had bad experiences on most meds I’ve tried, including Wellbutrin which has a similar mecahnism of action as Sunosi iirc, so I’m pretty med shy at this point).

Comments are closed.